Launching a Pilot to Collect Socio-Demographic Data Tri-Hospital Collaborative on Health Equity Data Collection Ruby Lam

Why Does This Even Matter? There is a higher incidence of obesity in the inner suburbs. Why is this? We know poverty and health are associated, but what is the effect of compounded disadvantage? –Are you worse off if you are low-income and immigrant? –Low-income and disabled?

Why Does This Even Matter? Do the people we serve reflect the people who live in our catchment area? Are care protocols being followed consistently across all populations? Which populations don't walk through our doors at all? What accounts for this? Where should we invest to improve quality of care?

Great Reasons To Collect Socio-Demographic Data 1.Determine the existence, nature and extent of health disparities 2.Know where gaps lie and who they affect 3.Understand the intersectionality of various forms of social exclusion on health 4.Align operations with those most in need 5.Make informed/evidence-based decisions 6.Aid in policy development, service planning, and quality improvement 7.Improve customer service 8.Monitor organizational performance 9.Help meet provincial standards

The Gold Standard For Measuring Health Equity Link patient-level demographic data to patient-level health outcomes data Gathering socio-demographic data is a necessary first step to closing health disparities

Our Research Questions Which socio-demographic variables should be collected? Who is the best suited to ask patients for sensitive personal information, and when? What formats maximize response rates? How best to educate patients and staff about socio-demographic data collection?

Challenges Of Doing This Work Lack of IT interoperability Negative association / misunderstanding about the need to collect demographic data Body of research on socio-demographic data collection is limited

Environmental Scan Interviews with 12 key informants who have collected socio-demographic client data: –CAISI (Client Access to Integrated Services and Information) –Centre for Addiction and Mental Health – Problem Gambling Services –Centre for Addiction and Mental Health – Rainbow Services –Center for Health Equity and Social Justice (Boston)

Environmental Scan -Committee for Accessible AIDS Treatment -Dianne Patychuk -Mount Sinai Hospital - Neonatology -South Riverdale Community Health Centre -Thorncliffe Neighbourhood Office / Public Interest -Toronto Community Housing Corporation -Toronto District School Board -United Way Toronto

Literature Review Evidence base of the critical issues, challenges and promising practices 50 articles, 2000 onwards, PubMed and Google Scholar

Key Findings You Need to Communicate Transparency and Clarity of Purpose “Collecting demographic data must be rooted in equity objectives and communicated that way. Everyone is committed to equity – no one is going to oppose it.” –Rob Brown –Toronto District School Board “By collecting this information we are working to give you the best possible care on a number of levels.” –Boston Disparities Project

Key Findings People are Most Resistant to Answer Questions about their Income “We noticed that people stopped filling out the form entirely once they came to the income question.” –Lisa Kha – South Riverdale Community Health Centre

Key Findings Sequencing: From Least to Most Sensitive “Sequencing is important. You should ask in the order of least to most sensitive. First ask the things that you’re born with, then things that are choices, and lastly things that are choices that other people might not like.” –Sean Meagher – Public Interest

Key Findings There are Different Views about the Usefulness of ‘Ethnicity’ “Ethnicity is a swamp….Over time the number of possible responses could double.” –Rob Brown – Toronto District School Board “Ethnicity is more important than race for telling us about culture and language.” –Meghan Patterson – Boston Disparities Project

Key Findings Race and Ethnicity Should be Self-Identified “The response we got from the public about asking open-ended questions on race and ethnicity was: ‘It’s about time! Thank you for not telling me who I am and letting me answer all of who I am.’” –Rebekah Gowler - Boston Disparities Project When Should Socio-Demographic Questions be Asked, By Whom? “Registration clerks should ask for basic information but let clinicians pose the more sensitive questions during a second interview.” –Alan Li – Committee for Accessible AIDS Treatment

Key Findings A critical success factor is helping staff understand the larger purpose of data collection “The most important part of training is helping people understand why doing this is important, otherwise their discomfort won’t go away.” –Sean Meagher – Public Interest “Gaming is a big problem – staff will be dishonest or put down something that’s not true if they don’t believe in it.” –Dianne Patychuk

How We Landed We are not measuring service equity The Canadian context is unique –Educational attainment Balancing best practices with practical considerations –'Race' is not constructed as an open-ended question –'Ethnicity' not asked